Category Archives: Autism

Silver Linings. Very thin ones.

Silver Linings. Very thin ones.

August is, as always, August.  Both kids are rough without school structures and therapies, Andrew and my work schedules remain full, childcare is costly and logistically complicated, it’s stupid hot, etc, etc, etc…but there are a few good things.  Kind of good.  You can note their goodness as you sink into the bog of August soul-sucking angst.

  1. Family rallies.  We have a steady stream of family coming in to adjust the adult to child ratio, to watch the kids so we can squeeze work in, to facilitate the Camp Hagan schedule I set up to try to give the kids some sense of order.  Aunt Kyla is here this week, Cousin Lena is coming for a long weekend, then Grandma Kathy comes on her heels…and then it will very nearly be the first day of school.  It is wonderful not only to see family, but to feel their love and support in their sacrifice of time.
  2. Be in the now.  The only way to get through August, I find, is to shut down the long-term thinking.  It’s too much.  It’s impossible.  It’s an unreasonable time frame of hard.  When you look at it, you get completely overwhelmed and kinda bitchy (I mean, I do anyway).  So – you only look at today, and maybe a peek at tomorrow to be sure you have childcare.  And you find that today, this hour, this minute, this breath, you are, in fact, doing it.  You are okay.  And the next breath.  And the next.  It’s – good? – to be reminded of that.  It does take some mental discipline.
  3. Setting expectations.  We’re not new to this August thang.  So, when you say year after year to your job, your church, your friends, your facebook feed “August Hard.  We can’t do August.  No, it’s August.”…well, people eventually get it, and stop asking you to do things in August.  My daily log in my BuJo has way less items on it, and that’s essential because I can’t do anything, it’s August…but it’s kind of nice to have a few less plates going in general.
  4. First Day of School Joy.  I’ve heard other families talk about their kids (and even sometimes the parents, which I do not understand, but whatever) mourning the end of summer.  Resisting the new school year.  Whining about getting up in the morning.  Not my family!  We all eagerly see the day count get shorter and shorter, and on that First Day of School, there is so much rejoicing in our house.  That much joy has to be a good thing.

This August is additionally hard as it’s our first in Trumplandia.  The internal stress from the home combined with the external stress of poking the bear of North Korea/nuclear war and Nazi’s marching about in Virginia  (good Lord, who’dve ever thought I’d type that sentence in freaking 2017…?) is at times simply too much.  But we do have these small silver linings as well.

Baby Advice – what I wish I could tell new parents

Baby Advice – what I wish I could tell new parents

Right, so, first thing’s first – I hate getting unsolicited parenting advice.  I hated it before we knew that Isaac was special, and I hate it even more now that the unsolicited advice is rarely helpful to our situation.  “Have you tried ABA?  I read an article that autistic kids do really well with ABA.” <sigh>  “Yes, oddly enough, I am in the know of the most common and documented autism therapy.  Thanks, though.”

Thus, I cringe when I hear myself *give* unsolicited parenting advice.  As it’s happening, my inner voice goes, “No.  NO!  What are you doing, crazy lady?  They hate this!  You hate this!  Stop stop stop!”

It’s rare.  I’ve gotten pretty good at biting my tongue.

But when a new baby comes on the scene, and especially when that new baby is part of my tribe (new nephew, good friend’s new kiddo, etc) – all this advice comes bubbling up and I hold it in.  My new nephew Charlie made his debut last week, and I have so. many. thoughts.

Then I realized – I have a blog!  I can type all my thoughts!  And it’s not giving unsolictied advice, because I’m just sharing my thoughts to the world!

If any new parents (hi Aidan!) happen to read this…well, so be it.  I’m not saying any of this is super helpful or whatever.  It’s just my list.

<drumroll please>

  1. You can’t make a baby sleep.  You can set up behaviors, rituals, and environments that are conducive to sleep…but none of those things guarantee sleep.  Babies do what they gotta do.  Roll with it.
  2. You can be 100% confident that they will either figure out sleeping through the night eventually, or that they will not sleep but will not bother you so you can sleep.  It will happen, someday.  You can set up behaviors, rituals, and environments that are conducive to that day coming, but you cannot make it happen.
  3. Nurse on demand.  It’s what your body and the baby’s body wants.  Be lazy, do what’s easy, nurse on demand.  I am the most scheduled person alive, and I nursed on demand because trying to make a baby shift to my schedule was horrible.
  4. Get life insurance ASAP.  Once anything is wrong with your kid – from autism to pre-existing health stuff – that insurance gets more expensive and harder to get.  Get it as soon after birth as possible – it’ll be super cheap and they have good options now that you can cash out at age 18 and use for college costs.
  5. Baths are important…but not, like, super-important.  If your kid looks dirty or smells, then bath them.  If they don’t, then don’t.  (I mean, babies are pretty gross so you end up bathing daily.  And a bathtime at night is conducive to helping with sleep.  All good reasons…but as kids get older?  If they look and smell clean, let it go.)
  6. You are going to be the primary influence on your kid – on their morals, their outlook on life, on how they view the world.  If someone else in your kid’s life doesn’t exactly match how you roll…it’s okay.  Your kid can still have time with, have a relationship with that person.  You’ve got this.
  7. The parent makes the weather in the house.  How you react to things – to mistakes, to thwarted plans, to rainy days, to running late, to when your kid messes up, or throws up all over you…how you react sets the tone for the whole day, the whole house, your baby’s whole world.  Breathe first.  Take care.  You make the weather.
  8. It is more important to be a good observer of your baby than to know all the facts and “should’s” and details of child development.  Speaking as someone who parented a baby who matched up with *none* of the milestones or sensory reactions of a typical baby…my knowing him, watching him, grokking him was so much more important than my knowing the “right” thing.  If something goes wrong – physical health, developmental delays – you knowing your baby will help the experts SO MUCH.  Watch.  Learn.  Be with them.  Be the expert in your kid.
  9. Ask for help, early and often.  Call the on-call nurse.  Rally your family and friends when you need them.  Related to 10.
  10. Have a village.  You cannot do this alone.  Even if you can for a short time with everything going fine, there will be a time when you cannot.  Deliberately build a village of people you know and trust who also know and love your baby.  Even if you don’t need a sitter right then, have one and be building that relationship for when you do – even if all you do is go out for coffee for 40 minutes and come back home.  So worth it to have that village when you need it.  And you will.

 

Okay, take it with a grain of salt – my parenting journey has been very specific to autism and being atypical.  But…this is what I want to share with the new parents I love.

Re-entry

Re-entry

We were so smart and kind to ourselves this year!  We returned from our annual Ohio summer trip on Sunday, and due to the quirks of the holiday weekend, had all of Monday and Tuesday off before we had to be back at school/work on Wednesday.  It was lovely – slow, easy, summer days to get the house back in order, play some video games, assure Mako we love him and when we leave we will return, try a new cocktail from Southern Living (recipe: HERE, and verdict – eh, it’s okay.  Not gonna replace my G&T for summer cocktail preference.), etc.

But this morning, I forgot something.  I forgot that the first days of school (in the fall, and in the summer) the bus company really doesn’t have it all figured out yet.  They seem to prefer to do a trial by fire on the first day, so the times they tell you for pick up and drop off are really just kind of made up.  In my stay-at-home life, I just planned a very easy day for the first days, since I knew I’d be standing by the road, squinting to see if I could spy a school bus, for an hour or so in the morning and the afternoon.

stop-1206475_960_720So, this morning, Andrew and I both had to be back at work to remind our bosses that we’re valuable, reliable, employees…and the buses were 45 minutes late.  Which means we were 45 minutes late.  And as it was happening, I was like, “Erika, you forgot, you dingbat!”.  And, poor Andrew, he’s used to me taking the easy flex day since I have the more flexible schedule…but now I do Isaac’s earlier bus to get to work on time, and he does Kai’s later bus to get to work not-too-late since he can work late and I cannot (have to be home for bus drop-off).

I suppose I should be indignant that the bus company can’t seem to figure this out…but I’m honestly at the “this is how it is” phase.  I’ve been doing first days of school with Ridgefield Public Schools for 8 years now.  This is, absolutely, always, how it is.  Is it rude to parents, cruel to autistic kids who thrive on schedule, and unprofessional in general?  You betcha, but, it is how it is.

I just have to remember this fall…